Today is Esmé’s fourth birthday. Her birthday–and the days that lead up to it–is always filled with a lot of mixed emotions (you can see last year’s post here). This day marks the entrance into the world of the most amazing person I have ever known–the absolute love of my life. It is an overwhelmingly happy day for that reason. But it is also a reminder of a series of losses and the beginning of having to lead my life in an almost surgical way: calculating risks, removing distractions, focusing more when things are frightening. And since it is also very hard to find ways to celebrate for Esmé–just giving her as regular of a day as possible is the best gift–I often just sort of feel confused about what to do for her.
As I way for me to celebrate, I’ve spent the last four days going over her life in pictures…and it is really amazing to see how far she’s come in so many ways. And I am very excited for the coming year with my 4-year-old (OMG!!). I try to avoid having expectations about what, precisely, is coming…because I’ve certainly already learned that is just a way to make myself crazy.
More generally speaking, I do expect that the important lessons of the last four years will continue…
A lot of what I have learned in the last four years is hard to put into words. I feel as though Esmé is teaching me daily about love, determination, courage. She is also teaching me about the balance between patience and pluck…forgiveness and protection…accepting reality and pushing boundaries. I am not a fast learner, but she is a persistent teacher. Much of this blog is evidence of that slow and not-so-steady effort to learn the things she is showing me.
One thing I really want to talk about today–in the midst of the number of calls and texts and messages we always get wishing Esmé a happy birthday, and congratulating us on what an awesome girl we have–is that one of the things about having a daughter like Esmé is that André and I cannot raise her alone. I mean this in both a figurative and a literal way.
There is no such thing as being Ezzy’s parents without the tremendous group of people who have surrounded us over the years–helping guide us through keeping her alive, healthy, happy, growing, learning…And I want to take a moment today to thank them from the very bottom of my heart.
Our network of family and friends has been so tremendously involved in helping us through these years…they bring meals (and coffee!), they drop everything when needed, come along on doctor’s visits, they listen when everything is too much, they help find solutions, they celebrate Esmé’s gains with us–and hold our hands through the scary stuff, they check in just because, they help us share Ezzy with the world. They are here, by our side, in all the various ways they can be…in that way that just clarifies the entire world into “our people” and everyone else. There are people I thought would be there who aren’t, but far far far more there are people I didn’t expect to have by our side who are in so many ways, that even when they seem “little,” they aren’t, not to me.
Over the years Esmé has had a number of therapists and teachers who are in our home sometimes multiple times a week many of them for years–like our physical therapist Rich, who has been with us since Ez was 2 1/2 months old. Ezzy has physical therapy, speech therapy, special ed, vision therapy, music therapy, hippotherapy, adaptive technology, and, soon, occupational therapy. And now she also has teachers at school who see her regularly. Each of these these team members has helped us understand our daughter better. They have helped us navigate through the complicated world of adaptive devices, techniques, tools, and are helping guide us to prepare Ez for the wider world. And they have all been patient and thoughtful allies…listening when I need to vent, helping problem solve, confirming what we know: that Esmé is an amazing little girl who is not represented by the set of test designating her as less than the first percentile in basically every skill area.
Oh, and how can I explain her spectacular doctors?…from very early on we were completely determined to find only the very best doctors for Esmé. For us this meant not just having the smartest (although that too), but also people we could work with honestly and productively. As a result we have built a coherent team of doctors who work with us as partners, who respect our opinions while pushing us when we need it, who see Esmé as a whole person who does not seem to ever fit in any box. These are people who answered frantic emails in the middle of the night, who let us know we would not be alone in this. Over the years many of them have become more that I ever could have hoped–helping us bring Esmé to a place that seemed impossible not long ago–when she was seizing weekly, vomiting constantly, and fighting unending infections. We have met some truly amazing doctors along the way–and, honestly, the, um, let’s say, “less amazing” ones have also taught us a lot…including how to recognize a great one from a mile away!
The nurses in Esmé’s life–from the nurses who helped save her life in April 2011, to the team that manages her care at home–have kept Esmé safe in those ways that can be very obvious (like noticing big changes in her status) and can be so subtle, but so extraordinarily important (like learning their own ways to understand Ezzy’s almost telepathic attempts at communication). Esmé’s team of home nurses and her assistant Mayah (who will be a nurse soon!) have been essential in her process of stabilizing medically. So much of that has been preventative care–keeping her out of the hospital (and away from germs), noticing slight changes in her health before things get out of control, they offer her the kind of care that we simply cannot provide on our own 24 hours a day. They are also all trusted partners in understanding Esmé, developing creative solutions to her challenges, and helping us better understand her care.
The online community of parents that we have formed relationships with over the years–many of whom also fit in that first category of “our people”–have been a wealth of knowledge and support as we navigate situations that we cannot find answers for in the “typical” parenting books. I would be lost without these communities.
Finally, and I am not sure that all of you realize it, but each and every person who reads this blog, follows us on Facebook, and keeps an eye out for news on Ezzy has been a part of getting Ezzy this far. There have been days that writing on here has kept me centered and able to go forward…but more than that, knowing that someone was reading, cheering Ezzy on, looking out for her gains has meant the world to me…it has given me hope that there are people who will look out for her, see her as she is, and help us protect her as she grows and, increasingly, enters the world.
It is humbling to need so much help to raise our daughter. But it is also unimaginably inspiring to see all of these people, ready to help us do it. I can easily imagine them all, filling an auditorium to the point of overflowing. I don’t know what Year 5 of Ezzy’s life will look like–but I know that all of these people–all of you–everyone who is helping us to raise Esmé you all will be part of this coming year.
I do know it will be a year with surprises and love and beauty–as all Ezzy’s years have been.
And we look forward to sharing it with all of you.
